is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.

Wednesday, June 23, 2010

Getting Back in the Game

Well, here is my triumphant return to blogging (LOL - how's that for dramatic?) Anyway, not that I haven't been posting pics, but I've had very little to say. Or very little that I knew how to say "appropriately". For those of you that know me, to be at a loss for words is momumental! I usually have plenty to say. But at risk of making my blog a bitch site, I've gone with the old adtage if you don't have anything nice to say, don't say anything at all. Now that's not quite accurate, but I didn't want to be all doom and gloom and oh woa is me, because that's how I was feeling a lot of the time. But feeling a little reminicent of High School Musical, I'm going to get my head in the game. (yes, I watch FAR too much preteen television!)

Anyway, it's been a TOUGH few years. For those of you who have been following along or who have watched the 1 year video of Chloe's life, you'll know what I mean. But you might be wondering what's been so tough about the 2nd year, because truth is, Chloe's just done better and better. Well, I have to confide in you, my dear followers, that after our traumatic first year with Chloe I really crashed. And I mean crashed hard. We're talking post-traumatic stress. It's taken me a full year to recover from that difficult year. A full year to learn how to live without the constant flow of adrenaline rushing through my body as I feared constantly for my daughter's life. FINALLY I can look at that smile of hers and soak it in, instead of wondering what lies ahead of us. I can listen to her laughter filling my soul and not fear that later today she might be choking on her own mucus. I can roll around on the floor with her and toss her up into the air and not worry that I'm going to break her (okay, I have to be careful not to squish her or drop her, but that's all NORMAL!) Don't get me wrong. I've still got a ways to go. But I finally feel that I can and WILL make it through this okay. That I am one of the lucky ones. Not ONLY was I given the gift of a child with Down syndrome (and believe me, I truly think it's a gift), but I have also been given the gift of being in a place where I can enjoy her for who she is without all the baggage of wondering if she will "survive". Speaking of gifts, (sorry I need to go off on a tangent), but it's so hard for me to even remember that faithful day when we found out we would have a child with Down syndrome. The heartbreak was just overwhelming. I look back on that and find it so hard to believe. How did we NOT KNOW what a gift she would be? How 100% perfect she would be. That we would love every single solitary cell that lived in her body. That she would not only change OUR lives for the better, but every single person in her path. How did we not know all that? It's hard to imagine that we ever grieved that she was not going to be anything other than who she is.

Sorry, I digress. Anyway, I guess the point of my post, is that I think I'm back. Healthy enough mentally to write again. To share with you our world while we dance through the tulips (and for those of you not familiar with the poem, there is a famous poem written by Emily Perl Kingsley "Welcome to Holland" where she describes having a child with special needs similar to that of planning a trip to Italy, but ending up in Holland. How disappointed you are when you learn you're in Holland, but then, if you let yourself, you find that Holland is plenty beautiful in it's own right. Holland is known for it's tulips, so I have titled my blog "Dancing Through the Tulips" because we, as a family, are learning the many joys (with plenty of stumbles) of having unintentially landed in Holland.)

1 comment:

Eric and I were just talking today about crazy it was that we were so upset to learn about Brooke's DS...she is so wonderful! Just like Chloe is wonderful and so amazing! So happy you can finally start to breathe easier and enjoy your time with her without all the stress!

Pray for Dillon

About Me

I am a 44-year-old woman whose life changed when I learned my third child would be born with Down syndrome. Right away I knew that our lives would be changed forever, I just never in my wildest dreams could have imagined it would be like this. This is my family's story.
In the months preceding the start of this blog, starting when Chloe was just 6 days old, she had 7 hospitalizations, 1 open-heart surgery, and 1 g-tube surgery. She was the youngest child at our hospital to ever be put on CPAP at home for Severe Obstructive Sleep Apnea. She had a TINY opening to her airway and therefore frequently suffered from upper respiratory incidents. Chloe also had GERD and was being considered for a Nissen Fundoplication. But she is an AMAZING fighter and the happiest girlI've ever known!